Thursday, August 28, 2008

After I posted yesterday we received a call from MSK about an hour later. It was Dr. Modack and he called to inform us of some changes. They had reviewed the scans that were taken of Cody last week. One of the scans has shown some concerning uptake in Cody's liver. As you remember, the liver is where the latest tumor was removed. This uptake is identified by the nuclear dye that is mixed with dextrose and injected into Cody the day before the scan. Cancer cells are much more aggressive and hungry than normal cells so they consume the dextrose very quickly and light up from the dye. This uptake is nothing new. It has been showing up ever since he liver resection and hasn't changed much since. None the less, they are making a change in the plan of attack. They are still going to give Cody 3f8 but they are switching the drug that will be administered with it. They drug is called B-glucan and it is a byproduct of yeast, mushrooms and other foods. This process is much less proven than the first. In fact it is considered a phase one study. Cody will be starting a week later than first planned and it will be administered for two weeks at a time instead of one. There will also only be 3 weeks between treatments. "We are in for a long rough ride." Cody and I also don't have to go to Georgetown today.

While I'm posting on a negative note, I have to comment about the kids. As I posted before, they have many things planned for us, things such as putt-putt golf, water parks, amusement parks. I've got to say, no matter what we are doing the kids seem to be fighting most of the time. So much so, that I don't want to take them anywhere else. I know what you are thinking, "that's the way all kids are." Well, you are right but we are also the way parents are and I feel as though we need a break also. We went to play putt-putt last night at 8 dollars a head and they were arguing and fighting the whole time. It was all I could do to keep my cool. I felt like spanking them all right there but I didn't want to spend the evening in jail. This vacation has not been as relaxing as you would think. I've been reflecting on everything and I'm having one of those rough times dealing with it all. The phone call didn't help much either. You know, when your child has an awful disease like this you not only have to deal with it but you have to deal with all the other things that parents and two very different married people do. I'm running on empty....

Wednesday, August 27, 2008

Things are going by at quite a clip. After arriving here on Sunday afternoon we unpacked and went straight to the beach. The house is a stones throw away from the beach. It is a wonderful 4 unit building that is very well kept. The organization that owns it and sets up these vacations is "Believe In Tomorrow." They do so much to make your stay a memorable time. They have scheduled many things for us to do this week. Companies and businesses provide free meals, tours and services that we can pick and choose from. Monday evening we went to a seafood restaurant for all you can eat crabs. Those of you who know me, know that I love blue crabs and it couldn't get much better than that. As is the case at home, I get the kids eating and then by the time I get to eat they are done and want to got do something else. Yesterday we went to the beach in the morning and then we had a trip scheduled to the Coast Guard station. We were suppose to go out on one of their boats but the sea was too rough and they didn't want to take us out. The families got to tour the boats and the kids were able to check out every nook and cranny. They went into the engine room, the galley and even got to sit up at the helm. They really did love it but we were all disappointed that we weren't able to go out to sea. The day ended with "arts and crafts", a cookout for the families at the beach house and then they had professional photographers there taking pictures of the kids. In the evening each family was scheduled to go down by the ocean for family portraits. It was a wonderful time.

Tomorrow morning I will be getting up with Cody and we are driving back to Georgetown. He has to get the first of the daily shots that prep him for the 3f8 treatments. They just want to monitor him during the first one to make sure he has no side affects. The rest will be given by me. Diane will be taking him up to New York on Labor Day to start the treatments the following day. They will have to stay through the weekend because he will get 5 doses. With Labor Day being Monday he will not be able to start until Tuesday. We still don't have all the results back from MSK from last week but as I always say, "no news is good news."

We should have many great pictures from this trip but I have no way of uploading them until we get home. I'll probably post one more time this week to let you all know what is going on. Thank you all for the kind thoughts and prayers.

Sunday, August 24, 2008

Cody was discharged this morning at 6am per my request. He had no fever since checking in on Friday night. We are packing up and heading to the beach. If you don't hear from me for the week, "no news is good news.."

Friday, August 22, 2008

Today was a very rough day. We buried our beloved dog Bear. I would rather not disclose the true reason for his death but it hits very close to home. We mourned his death as a family. The kids are obviously are taking it very hard. They all have grown up climbing over that dog when they were babies. Diane has had Bear longer than me. She is taking it very hard also.

It's 8:00 a.m. Thursday morning. Everyone is still sleeping. We stayed up to watch the U.S. Woman's Volleyball Team win gold last night. It was a great win.

Well sorry for not posting sooner but we have been pretty busy and when I do have any down time Cody demands that he get it.

Just to touch on a few things that have taken place. On Tuesday morning Cody and I got up for a 8 a.m. appointment. Cody had a MRI w/sedation. I have to note that this was the very best that he has come out of sedation. He was just a little groggy but pretty happy. We waited for a few minutes to talk to the doctor but the nurse came out and said that the doctor couldn't see us so we headed back to the room. As soon as we got back my cell phone rang and it was the nurse. She said that Cody's blood came back and he needed GCSF. That is the booster. Well we headed back up there but Cody didn't complain one bit. When we got there they took use right back to the IV room. The nurse was ready with the meds. Now here is something that I won't count on every time, but we did not expect the GCSF to be administered with a needle but through his accessed port. We didn't put any numbing cream on his leg but he took it without one word of protest. In fact, he told the nurse that it didn't hurt at all. I was so proud of him. When we got back to RM house all Cody wanted to do was play in the play room. This week is a special summer camp going on for the families at RM house. Everyday they do fun things. On this day they planned a trip to the BrooklynBridge. Cody didn't want to go and neither did my nephew Chris so I took Daniela. We walked across the bridge from the Manhattan side over to the Brooklyn side. I got some nice pictures I think. It was a marvelous walk and you can see so much of NY. I recommend it to anyone who comes up to the city. After we got to the other side we went to The Ice Cream Factory which a small house down by the river. They provided free ice cream to the families and we enjoyed some time down by the water. Then we took the bus back to RM house.

Yesterday, we had to be there @ 7:45 for his blood test to make sure he didn't eat anything before the test. I thought it was going to be a finger stick but it turned out that they were able to get it from his line. We then went downstairs to nuclear medicine and had his PETscan done. It was after lunch when we got back to the RM house. Chris and Daniela went on a fishing trip with the great people from RM house while we were at the hospital. They had a great time and caught some nice fish.

I'm jealous!

Today Cody had his MIBG scan at 9:45 and then he had his bone marrow test around 12:30. After that I had a chance to speak with Dr. Modack. He told me that Cody’s MRI from Tuesday came back good. He didn’t have results from any of the other procedures yet. He informed me that if the tests come back as we hope, (NO EVIDENCE OF DISEASE) he will begin the 3f8 w/GMCSF on the second of September. This is what we have been shooting for almost 10 months now. He touched on some of the possible side affects of the new treatment. We will have to start administering the GMCSF while we are on vacation. It is a small price to pay for our week at the beach. The kids are all looking forward to it. Okay, the adults are also.

I can’t sign off without telling you about our little adventure. I will start by saying “learn from my mistakes!” If you take a train up to Penn Station, make sure it is the Penn Station in NY and not NJ. That’s right, there are two Penn Stations and it cost me $85 to find out. Not only is it costly but the cab driver we had was one scary dude. His glasses looked like the bottoms of soda bottles. He had a nervous twitch and seemed to carry on conversations with himself. Chris had the honor of riding in the front seat with him. I rode in the back with Cody and Daniela. I was sitting on the hump and many times I think I felt the car bottom out on the axle. The driver didn’t know how to get around in NY and kept asking other drivers how to get where we wanted to go. One time he did a U-turn in the middle of a street only to find out that it was one way. I had to tell him to turn around. By the time we got to RM house I was pissed, nervous and tired. I was just glad to get out of that cab.

That is it for now. I will post the results of the test as I get them.

Saturday, August 16, 2008

Today was a busy day. Diane had to take Cody in to get his blood checked. She had to also take both of the other kids. I had to work. Cody's numbers were very good so he didn't need platelets or red blood.

On a low note our dog Bear seems to be on his last leg. He is about 14 or 15 years old. He has been a very good dog and he is going to be missed.

Thursday, August 14, 2008

It feels so good to be home... There is just a comfort level that is hard to explain. I can see it in all the kids. They are so happy to be together that they are just taking it all in. We are heading to NY on Monday afternoon. The first plan was Cody, Daniela and myself heading to NY. We found out yesterday that I could not take both kids by myself because of Ronald McDonald House rules. They ask that if you have more than one child that you have at least two adults. The reason is because if your child that is being treated at the hospital becomes ill or they have to stay in the hospital longer than expected there would be a problem with the second child. They don't want to be responsible for the other child. We understand that so we asked that Diane's nephew (Chris) go also. Chris said he would so we are on....

Wednesday, August 13, 2008

Cody had a great day today. He was taken off almost all of his meds and IV feeding last night. We spent almost 3 hours playing Monopoly with the Child life people. I know I have mentioned it before but Cody is very good at Monopoly and for his age he does a great job counting money. I have to tell you, none of the players cut him a break and he totally dismantled them. The police should have been called because Cody massacred them.. LOL He had most of the money and most of the property.

He is looking good and his blood is coming around nicely. Although his ANC number did not go up since yesterday, his white blood cells have went up while his neutrophils went down. That is not a bad thing. White blood cells are made up of many different things and neutrophils are just one. Neutrophils are very important because they fight infection from bacteria and fungus. I hope and expect that his ANC goes up even more tomorrow...

As far as what's next, I will give you all the tentative game plan tomorrow.

Tuesday, August 12, 2008

As much as we like Georgetown Hospital we still can't wait to get the heck out of there. Things are really starting to get under our skin. Things like the food service. On the weekends it seems like getting food to patients is not a priority to the hospital. On Diane's day they didn't ask what Cody wanted to eat. They delivered the wrong food. Or they didn't show up at all. It seems that they really have a hard time with staffing. The sad thing is, the patient is the one who suffers.

Saturday they knew that Cody was going to need platelets. It was decided by the "doctor on call" that they were going to wait until his platelet numbers went down even more before giving him platelets. They were plenty low on Saturday and there was no need to wait but "oh well." So at 3:30 Sunday morning they decide that the platelets are low enough. Well, the nurse and the resident pock their heads in the room at 3:30 and want Cody to take pre-medicine for the transfusion. I had to physically hold Cody down and force him to take the meds. This is the kinda bone headed stuff that drives us crazy. There has to be some level of thought put into this stuff. Anyway, it's all starting to wear on us.

As for Cody's numbers today. His ANC is at 1200 which is pretty good. I think the doctor told Diane that she wants him at 4 or 5 thousand before she will let him go home. At this point his number should double and triple everyday.

Monday, August 11, 2008

Cody's ANC number is starting to kick in.... Yesterday his ANC was 96 and today it is 414. Anything below 1000 is moderately neutropenic and anything below 500 is severely neutropenic. He is on his way.... He hasn't had a fever sense Saturday evening. I'll post more when I can...

Sunday, August 10, 2008

Diane just called me and I had to pass it on. Cody's blood work came back with 100 neutrophils! They are a type of white blood cell. You can click the link to find out more but this is a very good sign. It means his blood is coming back. I will try to post more later but I just wanted to let everyone know the good news...

Saturday, August 9, 2008

It's been 3 days now and Cody continues to have fevers. Last night it went up to 39.4 which is 102.7. Despite the fever he is in pretty good spirits. We are still waiting for his blood to show signs of recovery. We don't have much planned for today. He has to get his port needle changed once a week. Today is that day. We are going find a break in the antibiotic schedule to unhook his old needle and go outside for a little fresh air. He has to where a gown and mask while he is out but it will be worth it.

Today marks 15 days he has been in the hospital. I hope we are out by next Saturday. It all hinges on his blood....

Thursday, August 7, 2008

I noted in a couple of previous posts that Cody has really changed this time around. He was not getting angry and he was verbalizing his concerns and dislikes. Well the past couple of evenings he has started to revert back to the old Cody. I'm not sure why but it may have to do with sleep deprivation. He is not sleeping as well as we would like. With the constant IV flow and antibiotics he is getting up to pee every couple hours. Last evening he spiked a temperature and had to be given Tylenol. They had just started to cut back on some of the antibiotics and had to start them again. You wonder how he could get a fever while being on all these drugs? Well, right now his body has zero immunity. If anyone who comes into contact with him has the smallest germ or virus from outside his room brings it in to him he can catch it. When we are home and he would be at this stage we would have everyone take a shower and change into clean clothes as soon as they came in the door. We really hope to see some signs that his ANC is turning around, but nothing so far. "Come on little stem cells, do your thing."

I have a special treat for you all when I get home this evening. His hair is starting to fall out now, so we decided to give him a cut. I figured this was the best time to give him a Mohawk since it is going to fall out anyway. He looks sooo cute. I think you all will love it.

Thanks to all of you who have been sending cards and letters to Cody. He really enjoys opening them. Geel, Diane and I loved the letter from Morgan.

I'll post more later...

It's a good thing that I got these pictures yesterday. His hair was falling out and it was getting in his face. He proceeded to pull all of his hair out. I know, that sounds really bad but at this stage a good breeze would have blew it off... He looks so good with a mohawk. Enjoy!!!

Oh, the first picture he is with one of his very favorite nurses Kelly. He wanted to charge her money after she had her picture taken with him. And last but not least is our lovable Linda. She is one of the child life ladies that make life livable in the hospital for the kids and their families...

Tuesday, August 5, 2008

Cody has recovered from his constipation and is feeling much better. He is still getting many antibiotics for the fever he had the other day. His appetite is a little off but we are working on that. His blood numbers are still at rock bottom. They could stay that way for a few more days before they start heading up. Time will tell.

He could be in here for another 10 days or so. It all depends on how quickly he recovers.

Sunday, August 3, 2008

Cody received a suppository around 3pm this afternoon. He had his first BM around 3:30. Diane called me about 9pm and said he just had another. We hope he starts feeling better soon. He had a little fever and has been put on a slew of antibiotics. His blood numbers were rock bottom this morning so they have to watch him closely. He deserves some good days now so we hope they are coming soon.

Unfortunately Cody has yet to be able to get things moving. His is quite a bit of pain. He didn't sleep well at all last night and they had to give him Versed for his pain. They stopped the Morphine because it tends to constipate when used. It's 10:10 and he was just given more Versed. The Dr. is having an x-ray taken to determine how much stool and where it is located before proceeding with anything new.

Although I'm very tired I'm going to use the time that he is sleeping to try and get some work done. It is very hard to balance all of this.....

Friday, August 1, 2008

Okay, just a warning, it is very hard to hear what is being said. Cody had a rough night as I mentioned in the previous post. Luckily the cursing was over before I started recording. I'll get a second as soon as it is approved by Google...

Saturday morning:

The kids wanted to go out with me on my run. So they ran the first mile with me and then I did my usual 5. We are just relaxing before we head into the hospital. Here are a couple of pictures.

My poor angel didn't sleep well at all last night. At this point we think most of his stomach pain is because he is constipated. He hasn't had a BM for 5 days now. He was given a stool softener twice yesterday so we hope it kicks in soon. The pain is so bad that he has to be given morphine. His mouth pain is not nearly as bad as previous hard chemos. If he has a BM today I think he will feel much better.

His stem cell rescue is scheduled for 10 a.m. this morning. He has a team of 5 nurses who will be working with him. You all are in for a special treat. I'm going to take a video or two of the stem cell process and I will post it tomorrow when I am at home. It will give you all a much better idea of what stem cells are and how they are administered. I will post more later to let you know how things went.

Update:It is 10:50 and they just finished administering his stem cells. So far everything is going well. He is going back to sleep. He was cursing like a sailor for awhile but then settled right down. I'm very proud of him....

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About Me

I grew up, ah, got older in Ford City Pa. A small town 45 minutes up the Allegheny River from Pittsburgh. Growing up a true 70's child I really thought that the Steelers were suppose to win the Super Bowl every year. :D Being the free spirit that I am I couldn't wait to get out on my own, so I joined the Navy. I flew out to the Philippines and met my boat the USS John Paul Jones DDG32. From there we sailed back to the states and spent most of the rest of my tour between San Diego and Long Beach. Since getting out I married twice, had 6 children and lived in Groton CT, Pensacola FL, Germantown MD and now in Northern VA. I've been married to my wife Diane for 10 years now and have three energetic and loving children. My life reads like a fiction novel in many ways. Many ups and downs but I feel blessed to have this life. To some it may seem boring but it's all mine.. :D